We were so hopeful. Again. That we were done.
But we weren't. And again, we aren't.
With intractable seizures.
With epilepsy surgeries.
And with pandemic surges.
Awesome had another round of
Epilepsy pre-surgery testing
In the summer and fall of 2021.
All this testing
Culminated in a 13-day SEEG in October.
But we weren't. And again, we aren't.
With intractable seizures.
With epilepsy surgeries.
And with pandemic surges.
Awesome had another round of
Epilepsy pre-surgery testing
In the summer and fall of 2021.
All this testing
Culminated in a 13-day SEEG in October.
And then in late November,
Two days before Thanksgiving,
All of Awesome's doctors' meticulous data gathering
Careful analysis,
Deliberations, discussions, and decision making--
Things at which they'd worked so long and diligently--
Came to fruition:
Awesome had a second left frontal lobe resection surgery.
The photo at the beginning of this blogpost is of Awesome
In the ICU shortly
After that late November 2021 resection surgery.
We went into this second resection surgery
Knowing that it was likely,
If it was successful,
To simply reduce
Her seizure frequency, length, and severity,
Rather than make her seizure free.
Because there were areas that had--
During the SEEG stimulations--
Proven themselves
Capable of generating seizures,
But that simply could not be removed.
And so, this was palliative surgery,
It was unlikely to be curative.
But we also knew going in,
That this surgery simply had to be done.
Awesome's seizures were once again,
Rather than make her seizure free.
Because there were areas that had--
During the SEEG stimulations--
Proven themselves
Capable of generating seizures,
But that simply could not be removed.
And so, this was palliative surgery,
It was unlikely to be curative.
But we also knew going in,
That this surgery simply had to be done.
Awesome's seizures were once again,
Completely out of control
Both in length and frequency.
And just like before her
First resection surgery,
A few weeks before her second resection
She'd had an unusually terrifying seizure
That made us worry that we'd lose her.
And this seizure also gave her doctors pause.
And so, once all the data and analysis work
Was done, we were offered a
Resection surgery date
As soon as it could be arranged.
And that turned out to be
Two days before Thanksgiving.
Now, it has been 8 weeks since that
Second resection surgery,
Awesome's doctors tell us that it's far
Too early to say what this
Second surgery has netted her.
That it takes at least 6 months to know
And that there's still some possibility
That she could become
Seizure free as a result of this latest surgery.
But honestly, that seems unlikely,
Not only had they warned us before surgery,
That seizure freedom was unlikely.
Both in length and frequency.
And just like before her
First resection surgery,
A few weeks before her second resection
She'd had an unusually terrifying seizure
That made us worry that we'd lose her.
And this seizure also gave her doctors pause.
And so, once all the data and analysis work
Was done, we were offered a
Resection surgery date
As soon as it could be arranged.
And that turned out to be
Two days before Thanksgiving.
Now, it has been 8 weeks since that
Second resection surgery,
Awesome's doctors tell us that it's far
Too early to say what this
Second surgery has netted her.
That it takes at least 6 months to know
And that there's still some possibility
That she could become
Seizure free as a result of this latest surgery.
But honestly, that seems unlikely,
Not only had they warned us before surgery,
That seizure freedom was unlikely.
But Awesome is right now--
Eight weeks out
From her second epilepsy resection surgery--
Far from seizure free.
In these 8 weeks since her
Second resection, she's had
Twenty-one status complex partials
And four secondarily generalized tonic-clonics.
She's not seizure free
After this second resection surgery,
Just as she wasn't seizure free after her
First resection surgery.
But still, her seizures are reduced,
From what they were before surgery,
Just as they had been after her first resection surgery.
And the second surgery has dialed back her seizure
Severity too. Just as her first surgery had done
We appreciate all that Awesome's doctors do
And have done.
They are the best.
And so too, the EMU and epilepsy surgery staff.
And so too, her treatment team at the hospital that
Performed her first surgery
Who also were consulted during this round of surgeries.
Awesome's is just a very difficult case.
We were so hopeful. Again. That we were done.
But we weren't. And again, we aren't.
With intractable seizures.
With epilepsy surgeries.
And with pandemic surges.
We strive every day,
To live in hope.
And to continue to
Live in Hope.
Twenty-one status complex partials
And four secondarily generalized tonic-clonics.
She's not seizure free
After this second resection surgery,
Just as she wasn't seizure free after her
First resection surgery.
But still, her seizures are reduced,
From what they were before surgery,
Just as they had been after her first resection surgery.
And the second surgery has dialed back her seizure
Severity too. Just as her first surgery had done
We appreciate all that Awesome's doctors do
And have done.
They are the best.
And so too, the EMU and epilepsy surgery staff.
And so too, her treatment team at the hospital that
Performed her first surgery
Who also were consulted during this round of surgeries.
Awesome's is just a very difficult case.
We were so hopeful. Again. That we were done.
But we weren't. And again, we aren't.
With intractable seizures.
With epilepsy surgeries.
And with pandemic surges.
We strive every day,
To live in hope.
And to continue to
Live in Hope.
For our awesome Awesome.
That she will finally get seizure control
So that she can live the more nearly normal life
That she deserves.
That she will finally get seizure control
So that she can live the more nearly normal life
That she deserves.
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